Riley's Diagnosis

Riley James Faiai is my 2 year old son who was born with Craniosynostosis and probable Pfeiffer syndrome. When he was 5 months old, Riley had surgery to reconstruct his skull. This blog is the journal, story, and timeline that has helped me put Riley's Journey into words. Browse around the archives and feel free to contact me for more info or support! -Lauren (lfaiai@gmail.com)

Thursday, November 06, 2008

I've met some awesome people through Riley's journey in the past year and a half. It's not often that I get to meet these people face to face! Well, today, that changed! Dawn is the mom of a sweet boy named Cole. Dawn emailed me months ago after reading my blog to let me know her son had the same syndrome Riley does (Pfeiffer) and we realized that she lived only a few miles from us!! We moved to NC, and were never able to connect, but when Dawn read we were moving back, she contacted me about arranging to meet, and today we made it happen!! We met at a sweet new park in Rancho San Diego. Dawn also arranged for Alicia to meet us for the play date. Alicia's son Dominick was featured in a news article a couple months ago. Dominick has Crouzons, which is a syndrome closely related to Pfeiffer. It was so awesome to be able to connect with other moms who have been through the same journey I have with Riley! We talked about our babies the whole time and they wore themselves out playing in the water and all over the playground! I'm looking forward to connecting with Dawn and Alicia again soon!

Wednesday, September 03, 2008

It feels good to finally be back up to speed with Riley and his continued progress. Although we are very happy with the audiology department here at UNC, it has definitely been a lot of work, and a long process just trying to nail down all his records and previous testing from San Diego. We've pretty much just had to start from scratch as far as diagnosing Riley's hearing issues, which in my opinion is a good thing. I feel better about starting all over again, rather than relying on written documents from almost a year ago!

Today, Riley got a set of non-functioning tubes removed from his ears, another set replaced in his ears, and he also received another ABR (Auditory Brainstem Response) Test.

The surgery and testing were successful! The entire procedure took about 90min. The results weren't what we expected! But they were better, and so much more informative than what we knew before today.

Riley's right ear tested at normal levels for every frequency!! This is DEFINITELY an answered prayer! He has NEVER tested at normal levels in either ear. This test is the most extensive and accurate of any hearing test he's ever received. He had the same test back in San Diego, and that test revealed a mild loss in the right ear and significant loss in the left ear. For whatever reason that has changed, because today, that SAME TEST revealed perfect hearing in Riley's right ear! YAY! Does God say "See, I got your back!"? because I swear that's what I heard Him say when the doctor told us those results this morning!

We also got some new, and helpful news about Riley's left ear. They were much different than the right ear, which we knew would be the case! He still showed a significant loss in his left ear. They were able to diagnose him with Audio Neuropathy (nerve is not working properly) He will receive an MRI in the next couple of weeks to do more extensive research on why this ear is responding so poorly. All we know so far is it has to do with the nerve in his inner ear. So the MRI will hopefully reveal if the nerve is damaged or if it's even intact. The audiologist also informed us that hearing aids would not be productive and would only hinder Riley more. This is because hearing aids only AMPLIFY sound, and since the damaged nerve causes him only to hear a very muffled "white noise" sound, hearing aids would only make that "muffled white noise" sound LOUDER. Since Riley does have one "good" ear, we'll just start adjusting his therapy (behavioral and speech) to train him to compensate and maximize the use of that ear! Essentially just playing to his strengths! It made perfect sense to me, which is good since his testing has been so inconclusive until now! Our next step is to find out even more info after he receives an MRI. I'm excited to give this info to "Mrs. Margaret" (Riley's speech therapist), so she can even more strategically work with Riley on his speech! I really can't explain how thankful I am for her role in Riley's life right now!

Thanks everyone, for praying! I firmly believe the good news we received was a direct result of someone praying for complete healing in that ear today. Thanks to whoever said that prayer!!

Here are a few pictures we were able to take this morning before Riley's surgery!

Riley and Daddy at the hospital before checking in!

Watching cartoons and waiting for the anesthesiologist.

Getting sleepy and VERY tipsy after a dose of pre anesthesia sedative.

And off to the abyss! Or at least that's how it feels every time I hand him over for surgery!He never once cried! The doctors were surprised (they usually are) when Riley woke up completely calm and happy. We got him home and gave him some lunch. He was happy to see his brother, but still a little tipsy from the anesthesia.

Today was an encouraging day for us! It's so good to see results of God's hand. It's also feels good to be done with Riley's first round of testing in NC.

Monday, August 25, 2008

That's what I felt like after I got home from Riley's most recent series of appointments (all in one day). I've made new friends in Riley's new audiologist and head and neck surgeon! We'll be seeing them often in the next few weeks and months!

Last week, Riley was referred in another hearing screening, which means he didn't pass. In either ear. He has tubes in right now, but neither of them are functioning, so we have an appointment for the doctor to remove the tubes he has in now, and then in the same day, they're going to replace them with new tubes. Riley also needs another ABR test. He had one right before we left San Diego, but the records aren't very conclusive, so the department here at UNC wants to redo the test. He'll be sedated, and they'll do an hour long test to determine if his hearing loss is due to nerve damage (which I know it is, since they figured that out in SD), and how MUCH hearing loss he has. At that point, they'll most likely fit him with hearing aids right away. The doctors here do not like to wait until these kids are in school to give them hearing aids. They're much more aggressive about it. So we'll see what happens.

We are also all set up with the craniofacial team here in Raleigh. It's time for his year check up, when we'll find out if and when his next cranio surgery will take place. I LOVED my craniofacial team in Cali. I've done a lot of research, and DR. Kawamoto and his team are really the best of the best, so if he does have another surgery we'll most likely want to do it there in LA, where his initial surgery was. But I don't have to even start thinking about it until his next check up appointment.

Riley continues in another day of speech therapy today! He is making great strides in his speech , and has started using three word sentences which is a HUGE milestone for him, in a really short amount of time!! My favorite new phrase of Riley's is "I lub you mom"! He says it randomly all the time, and I know he knows what he's saying! He just melts my heart!!

Please pray for his upcoming appointments! We're trusting God that He's healing Riley everyday, and building a great life and future for my sweet boy!!

Thursday, July 31, 2008

I want to make a habit of using Riley's blog to highlight the stories of families who have contacted me about their children and upcoming craniosynostosis surgeries. I am so excited about this opportunity, and the encouragement that it might bring to the many families who have been encouraged by Riley's story!

This week I got an email from "Myra", from Miami FL, who shared a really sweet story about her son, Isaac Maxim "Max".

Myra and her husband adopted Max from Russia in December of 2007. After a number of doctor's visits, Max was diagnosed with craniosynostosis. He will have surgery on Monday, August 4th, 2008 to separate two sutures (Sagittal and Metopic) that are currently fused together. Max is 18 months old.

Please join me in praying for the Sierra family and specifically for Max.

Here are a few ways we can start praying. I will update as I receive updates from the family!

1. Pray for sweet Max's body today and this weekend. That he'd be healthy and strong leading up to his surgery date, this coming Monday, August 4th.

2. Pray for guidance and incredible wisdom for the doctors and hospital staff.

3. Pray for the Sierra family. That God would overwhelm them with peace and an outpouring of love and support from their extended family, and from others around the world who are praying!UPDATE #1!Myra's mother in law left a message on my voicemail today to let me know Max's surgery is over and was successful! They are in the waiting room right now, waiting to be reunited with Max! Thanks Sierra family, for the updates, and thanks to Riley's friends for praying! Continue to do so, throughout Max's recovery process in the next few days! Keep checking this post for updates!

UPDATE #3I was able to speak to Esther, Max's grandma, today! My heart is filled with joy every single time I hear a report from this family, and today was no different! Max is doing wonderful! His drainage tube was removed today, as well as the wrap around his head. He his very much aware, awake and even watching cartoons from his hospital bed! Swelling has been minimal, and he is slowly being weened off of his morphine! WOW! God has answered some BIG time prayers already! Please keep praying for Max's speedy recovery! Keep checking this post for updates!

UPDATE #4Thanks so much for your prayers and support! Max is out of the hospital, and his surgery was a complete success! He recovered incredibly quickly and is ding great at home getting back into the swing of things!! Here are a couple before and after pics.

MAX - Before Surgery:

MAX- After Surgery:Feel free to leave a comment with a note of encouragement to this awesome family!

Wednesday, July 16, 2008

This week, Riley's vocabulary expanded by at LEAST 15 words! It seems like he knew these words all along, and is just now able to literally voice them. He copies just about every word Cameron says, and he's starting to put words to many of his actions! Mrs. Margaret, Riley's speech therapist, has really been able to connect with Riley on a deep level! She's catalyzed something in my boy that has made him so excited about learning and using his words. He loves her dearly. He's full of hugs and kisses for her during the entire session. Riley ran and gave her a HUGE hug, even before she even walked in the door today. She didn't even have time to put her stuff down to hug him back! At first I thought he was just trying to use his charm to get what he wanted without having to speak. But I'm realizing, that's not the case. At least it's not now. Riley genuinely loves his time with "teacher", and he knows that she loves her time with him!

Riley ALSO started using the word "NO" this week. Although it has been a little irritating to hear, I am so encouraged that he KNOWS how to say it, when to say it, and what it means. That's one word I'll never have to work on him with! He's got it down!!

This week, I'm going to work with Riley on using words to distinguish between 2 choices. My hopes are that by next week, I'll be able to ask him if he wants "juice or water", and he'll be able to speak his choice instead of only pointing to it! He's already doing a great job.

This week was a great week. It is sooo awesome to be able to watch Riley's progress. I'm so proud of my sweet boy!

Thursday, July 10, 2008

It's Official! I know I'm WAY more excited about this than I should be! So...sorry for the hype. But I cannot tell you how stoked I am about Riley's story being featured on the Jorge Posada Foundation Website! I got an email a couple days ago, from the foundations creative director. He sent me a link to a preview site where I could see where Riley would be featured before they launched their new site. The site went live today! I'm just amped up at the opportunity I have to speak hope into families struggling through the same situations we've gone through with our sweet boy in the past year and a half.

As I was thinking about this post today, I was listening in the car to Jill Phillip's song "Grand Design". The lyrics humbled me in a powerful way. They speak into a time when I was scared, with endless questions. They also speak into this moment today. When, even though Riley has a long road ahead, today, I'm experiencing a piece of God's grand design for my Riley James and his journey with craniosynostosis. That his story might be hope. Even maybe to just one person.

Here are the lyrics:

"I knew it all along that this day was comingEven though I knew it doesn’t hurt any lessBut somehow the suffering draws me to YouI could start running in angerBut then what’s the point of a SaviorI feel the pain but it still doesn’t change who You areNothing I feel is outside of the reach of Your armsMy whole world could crumble but all of the pieces remainIn Your hands that are waiting to put them together againJust like I know You will in Your own time, in Your own wisdomOne day I’ll look back and see the grand designMaybe it will make sense then, these questions I haveBut with it all here front and centerSometimes it’s hard to rememberI could start running in angerBut then what’s the point of a Savior".

Friday, July 04, 2008

I recently watched an episode of "Live with Regis and Kelly", where Kelly mentioned she had hosted and event for the Jorge Posada Foundation. The Jorge Posada Foundation is a non-profit organization established by the New York Yankees’ All-Star Catcher, Jorge Posada, and his wife, Laura. Their son, Jorge Jr., was diagnosed with Craniosynostosis when he was just ten days old and had to undergo five major surgeries to correct the condition.

I was thrilled to hear someone talk about Craniosynostosis on one of the nations top morning shows. I immediately searched for and found the Jorge Posada Foundation website. After searching through it, I emailed them to tell them about Riley and how encouraged I was to know that Jorge Posada and his family are raising awareness about Craniosynostosis. I also told them about Riley's blog in hopes they might be able to use it, or refer it to people who are struggling through the sometimes scary moments of the treatment and process of the condition.

I got an immediate auto response reply from the foundation saying they were overwhelmed with emails, and that it might take a while for anyone to respond. I also remembered that I never gave them the actual web address of Riley's blog. "Oh well"! I figured if they really wanted the web address, they'd email me back, and I was just glad they were raising awareness, even without Riley's story.

This morning, Steve was checking my blog and noticed a comment from someone named Mark. It read:

"Hi Lauren, I'm writing as a representative for the Jorge Posada Foundation. We received a request to include Riley's blog on our new web site. But would only do so with your permission. If you have any questions please feel free to contact us at foundation@jorgeposada.com. We look forward to sharing Riley's story. Kind Regards - Mike"

I was stoked to hear that they found it on their own, or by someone else's request. I emailed back to APPROVE usage of Riley's blog on their website. I'm hoping that Riley's story linked from Jorge Posada's website will strengthen and give hope to people who have had the exact same thoughts and concerns I've had since the day of Riley's diagnosis.

Previous Posts on Riley's Diagnosis

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If you would like detailed information on Riley's condition or are interested in reading previous posts, please check out the blog archives menu located directly above this reminder. Thanks to everyone who is continually praying for my sweet baby boy!